So, the third round of chemo has been completed. His next scan is in less than 2 weeks. I feel sick just thinking about it. His tremor his increased to his leg, so now his whole left side tremors. He has weaned off the dex again- this is the first week on zero tablets, to be smashed with the worlds largest headache which has sent his straight back to bed. Better to sleep through it, than to suffer through it! We finally received our insurance money, which is a blessing, we have purchased a more suitable home for him & us. He will have his own area with his own kitchen- for him to watch tv, eat and sleep whenever he wants without disturbing the kids, and without us disturbing him. I still can't begin to understand how 2 children under the age of 4 must sound to someone with a constant thumping headache (amongst other things) So begins my new life, one were I am pretty much a single mum- packing, moving, cleaning, gardening etc Reality- When you purchase your second home ever, your family home, with the only person you have ever loved And the contract states "sole owner" sole owner- thats me- just me. Every day, I wake to hope it's just a nightmare. Every day I'm told by well meaning loved ones - you'll get your miracle, you look back on this together in 20 years and marvel how you ever got through it. And every day, it gets harder to believe that. But tomorrow is a new day And with a new day brings new hope
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Hi Melanie, Thank you for sharing your thoughts and experiences. My partner also has a glioma, anaplastic grade III, diagnosed at the beginning of this month, so we are just starting out on this journey. My children are older, and my partner is their Stepdad - their biological Dad died suddenly (in an accident) when they were young. My youngest was 4 at the time his biological Dad (Ben) died - he is now 14 and holds a deep guilt that he cannot remember Ben's face. All our family videos concentrate on the kids, with Ben rarely making it into the frame, only his voice from the sidelines captured - oh the regret! If only..... so many 'if only's. Now they have to face their loving Stepdad's illness. The hardest part for me losing Ben was the survival guilt, so I understand how becoming the sole owner of the house is a sickening feeling. The hard reality is that you must provide the best you can for yourself and your children, which means making financial arrangements. It's not giving in - it's being responsible. That is the burden we now carry - while others get to avoid reality in their optimism and miracle talk, we get to shoulder the responsibility of planning a path through the nightmare, and easing the worry for everyone else around us. Eventually though, this time too will pass, one way or another. Photos, videos, memories and bills will be all that remain. If you manage to capture some good moments in those images, you can influence how your children remember this time for the better. I hope the scan has the best possible outcome. From what I can gather, gliomas can be held at bay for many, many years. Kind regards, Jenny
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Oh Jenny :( I can't believe that you & your children have to face all of this not only once but twice We are absolutely blessed with time, videos and photos are something that I place a high value on now. I can't imagine how frustrating it must be to have to face the loss of your loved one again. My Ben is fighting strong, and I hope your husband does too. Keep in touch- pm me if you need to talk
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